Bladder exstrophy in adulthood: A narrative review of transitional health

Exstrophy-epispadias complex (EEC) classically presents as bladder exstrophy (BE) and requires lifetime urologic care. As men and women with BE age, there is an often difficult period of transition to adulthood in terms of addressing urologic and general health challenges. BE can lead to many urinary and sexual health issues as these patients age, which is often made more complex given their past surgical history and anatomy.

Given the relative paucity of research involving adult BE patients, we aim to provide a review of evidence-based best practice management for these patients to guide treating urologists and identify gaps in knowledge.

All recommendations are based on peer-reviewed research from trusted academic search engines to the degree that relevant research is available. Where evidence is scant, we rely on expert opinion and comparisons with other congenital urologic conditions where relevant. We also offer common clinical situations that arise as men and women with BE and other conditions age into adulthood to better understand the management of this complex population.

As patients with BE age, they experience a unique set of sexual, urinary, and general health challenges. Like other congenital urological conditions, long term care involving multidisciplinary teams at centers of excellence with a system for transition from pediatric to adult urology can lead to improved outcomes. Further research is needed regarding health outcomes in adults with BE as well as barriers limiting healthcare utilization.